With one in 10 women affected by endometriosis, chances are you know a woman who has it.

Key points:

No dedicated medical professional for endometriosis, women “have to become own expert”

Endometriosis as common as asthma and diabetes

In 2016, NHMRC allocated $14.7m to asthma research, $64.1m to diabetes research, $837,433 to endometriosis research

But, given it takes an average of seven to 10 years to diagnose the disease experts call the “silent epidemic”, she may not even know she has it.

And advocates say she will almost certainly be forced to become a self-taught expert on the incurable disease — because there is no such thing as an endometriosis specialist, and not enough money is spent on research.

Women with endometriosis cannot receive a complete treatment from one doctor because of its “complicated maze of symptoms” — including pelvic pain, heavy or irregular periods, bowel and bladder symptoms and fertility problems, Pelvic Pain Foundation of Australia director Dr Susan Evans said.

“There is no area of medicine that feels completely trained to cover all the aspects of a woman with endometriosis’s care,” Dr Evans said.

“It’s up to women … to learn themselves to recognise what’s happening.

“[But] it is very hard for a lot of women to learn all that by themselves.”

She said that, along with a lack of public awareness, meant women were “falling through the cracks”.

PHOTO: Dr Susan Evans said there is no dedicated medical professional a woman with endometriosis can see. (Supplied: UQ Institute for Molecular Bioscience)

Doctors unfamiliar with endometriosis

Many women have never heard of endometriosis, and some think their symptoms are “just part of being a woman”, Dr Evans said.

But doctors are also often unfamiliar with the disease, in which tissue similar to the lining of the uterus grows in other parts of the body, and they may not recognise it in patients — leading to a delay in diagnosis, she said.

“No-one believed me and they all made me out to feel like I was exaggerating and being a drama queen. One doctor actually told me to ‘get over it’.”

PHOTO: Endometriosis patient Ashleigh Knight said doctors made her feel like she was exaggerating. (Supplied)

Dr Evans said before many women are diagnosed with endometriosis, they visit hospital emergency departments, concerned about their pain.

But she said most emergency department staff do not recognise their symptoms and women leave “dissatisfied … with no explanation and a lot of embarrassment and fear”.

“They do the standard things to try and check that there’s not something life-threatening, they find nothing much, and unfortunately she goes home none the wiser,” she said.

Australian mother Lesley Freedman and her daughter Sylvia founded not-for-profit charity EndoActive after Sylvia’s diagnosis with endometriosis, when they said they encountered a health system that “appears to be oblivious to their suffering”.

PHOTO: Sylvia and Lesley Freedman founded a charity aiming to improve awareness and information of endometriosis. (Supplied: UQ Institute for Molecular Bioscience)

“[There is] very little awareness or understanding in the community or in places where you would expect to find it — educational institutions, hospitals, ambulance services and general practice,” Ms Freedman said.

“Women and girls are routinely turned away from emergency without pain relief or further investigation.”

But, even when doctors do recognise endometriosis in a patient and refer them to a gynaecologist, diagnosis can only be made through laparoscopic surgery and there is no cure.

There are however treatments for the symptoms, including laparoscopic surgery to remove affected tissue, hormonal treatments and pain-relief medication.

Dr Evans said it is not even known for sure how endometriosis grows in a woman’s body.

“No-one’s 100 per cent sure, but things are getting closer,” she said.

Pain so bad I wanted to die.
Endometriosis affects one in 10 women, but few know what it is and many go undiagnosed for years. For Endometriosis Awareness Month, Kathryn Perrott shares her story.

Endometriosis as common as asthma, diabetes

Scientists are working to find answers — but, although it is as common as asthma and diabetes, endometriosis is allocated only a fraction of the millions of dollars they each receive in research funding.

Last year, the National Health and Medical Research Council (NHMRC) allocated more than $14.7 million to asthma research and $64.1 million to diabetes research.

Only $837,433 was allocated to endometriosis research.

The NHMRC received a single grant application for endometriosis research in 2016, which was approved for $1.2 million over four years, a spokesman said.

The recipient, the Royal Women’s Hospital and University of Melbourne’s Professor Peter Rogers, who is studying endometriosis’s genetic component to find its cause, pointed to low awareness as a reason for its lack of funding.

Endometriosis facts:

There is no cure

Hysterectomy is not a cure

Pregnancy is not a cure

It does not always cause infertility

Diagnosis can only be made via surgical intervention

Endometriosis pain does not only occur during periods

Source: Endometriosis Australia

“Once you get the disease out there, so there is an understanding and awareness, then it’s easier,” he said.

While the NHMRC allocated funding “in a completely objective way”, researchers needed money to gather data before applying, he said.

“To get funding, you have to work on it for a while. You have to get data first — you have to have funding to get started.

“There’s not enough good grants for endometriosis going forward.

“We’ve been good at getting rid of pain and suffering in other areas, but we haven’t done such a good job in this one.”

Efforts are being made to better educate medical students — as well as girls in high schools — to recognise the signs of endometriosis, Dr Evans said.

Meanwhile, EndoActive held a national conference in Sydney in 2015, bringing together patients and experts from around the country, with another one in the works.

AbstractBackground
Endometriosis is a complex, chronic condition with known psychological and social implications for women. Little is known about clinicians’ perceptions of the psychosocial aspects of endometriosis and associated care.

Aim
To describe clinicians’ perceptions of women’s experiences of living with endometriosis and of the provision of psychosocial care for endometriosis.

Materials and methods
A qualitative approach was taken using semi-structured interviews with eight gynaecologists and four general practitioners who provide care to women with endometriosis in Victoria, conducted by telephone and in person from June to December 2014.

Results
Clinicians’ perceptions of women’s experiences of endometriosis were consistent with those reported by women, particularly when discussing potential infertility. However, less comprehensive descriptions of the effects of endometriosis on women’s work and social life and intimate relationships were observed. Some clinicians asserted that endometriosis is caused by poor mental health. General practitioners positioned themselves as best placed to provide psychosocial care to women with endometriosis; gynaecologists suggested various potential providers but rarely themselves. Most clinicians assessed themselves as not being adequately trained to understand and provide care for the psychosocial aspects of endometriosis; half of the gynaecologists did not believe it was necessary for them to do so.

Conclusions
The findings of this research demonstrate clinicians’ need for further support in the provision of psychosocial care for women with endometriosis, potentially through expanded clinical guidelines and professional development opportunities.

Introduction

Endometriosis is a chronic inflammatory condition characterised by endometrial-like tissue outside the uterus[1] it is experienced by 1.5% (population-based studies) to 15% (women attending tertiary services) of women.[2] Common symptoms include painful menstruation, heavy menstrual bleeding, and bowel and bladder dysfunction.[3] Although there is evidence of an association between endometriosis and infertility, the strength of this association and the underlying mechanisms are not yet clear.[4] Several potential co-morbid conditions have been identified, including asthma and migraine.[5, 6] There is currently no cure for endometriosis. Treatment options, such as surgical removal and hormonal therapy, aim to manage symptoms, but each is associated with side effects and may not be effective or tolerable in the long term.[7]

There is substantial research evidence of the psychosocial consequences of endometriosis. Surveys, predominantly in specialised clinics, suggest that women with endometriosis experience diminished quality of life, mental health and emotional well-being in comparison with the general population.[8] The only published Australian population-based study reported higher levels of psychological distress among women with endometriosis compared to the general population across two surveys conducted approximately 12 months apart; distress levels remained unchanged during this period for both those who were newly diagnosed and who reported a pre-existing diagnosis.[9] When comparing women who have endometriosis with and without chronic pelvic pain (CPP), those with CPP report reduced quality of life and mental health, suggesting that the experience of pain may explain reduced outcomes rather than endometriosis itself.[10, 11] Qualitative research has revealed that endometriosis affects all areas of women’s lives, including their work and social life, intimate relationships and self-perception.[12] Despite this pervasive evidence, the psychosocial consequences of endometriosis are not considered a research priority by the World Congress of Endometriosis delegates[13] nor is psychosocial care explicitly addressed in the current leading clinical guidelines.[7, 14]

Women’s reported experiences support the need for taking a biopsychosocial approach to endometriosis and for health professionals to tailor care to the needs of individual women.[4, 12, 15] However, few studies have examined clinicians’ perceptions of women’s experiences of endometriosis; these have focused on comparing women’s and clinicians’ perceptions of endometriosis symptoms. Gynaecologists’ perceptions of the consequences of endometriosis for women have been found to be similar to those reported by women in France[16] and Iran.[17] However, gynaecologists’ descriptions of severe pelvic pain, dysmenorrhoea and dyspareunia were less comprehensive,[16] and they gave less consideration to social life, daily activities and personal communication problems.[17] As far as the authors can discover, there has been no in-depth investigation of clinicians’ perceptions of psychosocial care for endometriosis.

This research aimed to describe clinicians’ perceptions of women’s experiences of living with endometriosis and of the provision of psychosocial care for endometriosis.

Materials and Methods

A qualitative method was selected as the most appropriate to achieve the research aims.[18] General practitioners and gynaecologists (the principal care providers to women with endometriosis) who practise in the state of Victoria, Australia, were invited to participate. Purposive recruitment was used to ensure diverse perspectives that could best illuminate the topic under investigation.[18] Gynaecologists were recruited through a letter of invitation emailed to all members on a public list of Victorian gynaecological surgeons (n = 59) and through communication within professional networks. General practitioners were recruited through advertisements in a medical school alumni newsletter, notices on clinic staff room noticeboards and communication within professional networks.

Semi-structured interviews were conducted by the first author during June–December 2014, in person or by telephone. Each began with a request for the clinician to describe their views of women’s experiences of endometriosis, followed by specific prompts to discuss the role of endometriosis in women’s work life, social life, intimate relationships, potential or diagnosed infertility, and mental health (areas identified by women as important).[12] Their opinions were sought on who is responsible for the psychosocial care of women with endometriosis and whether clinicians are adequately trained to provide such care. Finally, each clinician was asked whether they had anything else to say about women’s experiences of endometriosis. Demographic information was collected at the end of each interview.

Interviews were audio-recorded, with permission, and fully transcribed. Potentially identifying information was removed. Data were analysed thematically,[19] using NVivo10 to assist in data management. Transcripts were read several times by Author A for content familiarisation and to note all identifiable themes and patterns. Transcripts were first coded for themes derived from the questions asked (work life, social life, intimate relationships, potential infertility, mental health),[8, 12] whether they occurred directly in response to the questions or elsewhere in the interview. Transcripts were then searched for original themes in participants’ contributions, using a data-driven approach. Identified themes were discussed among all authors to select those that (i) represented a patterned response or meaning across several interviews or (ii) captured something uniquely significant relative to the research aims.[19] All transcripts were searched again to ensure that the analysis was accurate and comprehensive and that the final selected themes represented one of the two criteria. The revised scheme was applied to each transcript and exemplary quotations were selected.

The research was approved by the Monash University Human Research Ethics Committee (CF14/1282-2014000580).

Results
Participants

Twelve clinicians were interviewed by telephone (n = 9) and in person (n = 3) for an average of 11.94 min (range = 7.19–22.07). Their characteristics are summarised in Table 1.

Perceptions of women’s experiences of living with endometriosis
Work life and social life

When asked about the potential impact of endometriosis on women’s work lives and social lives, all clinicians said that the condition can affect these areas of women’s lives. Some related the effect on work life to menstrual pain; one general practitioner (GP) extended endometriosis’ influence to ‘pain or other symptoms’ that occurred ‘not just during their period’ [GP1].

Two clinicians nominated the woman’s employer as moderating the effect of endometriosis on her work life. One gynaecologist [GY4] was reassured to hear from his patients that some employers were ‘understanding’ but concerned to hear that others were not, and one GP [GP1] said that some of her patients prefer not to disclose their diagnosis to employers.

Some clinicians appeared to equate ‘social life’ with ‘sex life’. For example:

Socially, I think it does affect women’s intimate relationships, for some women. … Obviously, the sexual problems, in terms of being in pain and having sex, are one of the symptoms that can be really difficult for women to deal with, socially[GP1]

One GP extended aspects of a woman’s social life to the way that endometriosis ‘can interfere with them being able to exercise and do activities but also go out and about’ [GP4].

Intimate relationships

Most clinicians’ responses to this question focused on sexual intimacy. One gynaecologist implicated a more complex set of factors; for example:

If they’re having pain, that’s going to affect their sexual relationships, and whether that’s an issue in itself. And then there can be consequential things for someone whose mood and state of well-being is affected by their symptoms. … That has an impact on their relationships and their world, and the response of those around them to it, and the capacity to be supportive[GY8]

Some gynaecologists described assisting women to manage the effects of dyspareunia on their relationships. One said he first searches for physical evidence from previous surgeries ‘whether it would actually affect intercourse’ but acknowledged that this method is ‘really subjective’ [GY1]. Another [GY4] finds it useful to invite a woman’s male partner into a consultation where he describes (with diagrams) the potential for endometriosis to contribute to painful sexual intercourse. A third gynaecologist implements ‘pain management’ and refers women to ‘appropriate counselling’ [GY2].

Two clinicians reported rarely discussing the effects of endometriosis on their patients’ intimate relationships because they perceived that women prioritise care for pain and heavy bleeding [GP2, GY7] and because time constraints limit exploration of secondary symptoms [GP2].

A partner’s support (or lack thereof) was identified as affecting the impact of endometriosis on a woman’s sex life and relationship. One GP said that some partners were supportive but many do not understand endometriosis and ‘can be quite negative’ [GP1]. This GP commented that lesbian women appear to receive ‘more support and encouragement from partners’ than women with male partners. However, two gynaecologists [GY1, GY7] reported encountering supportive partners.

Potential or diagnosed infertility

All clinicians except one GP discussed the impact of potential or diagnosed infertility on women with endometriosis. A frequent comment was that the association between endometriosis and infertility was likely to be much weaker than usually claimed by ‘Dr Google’, the general public, and some doctors. This overstatement was described as causing women to be ‘stressed,’ ‘anxious,’ ‘worried’ and ‘concerned’ about infertility, particularly when first diagnosed with endometriosis.

The majority of clinicians described how they communicate with women about potential infertility. They are ‘very careful not to say that anyone’s infertile’ [GP2], offering reassurance that most women with endometriosis conceive either spontaneously or with assisted conception. Additional strategies include normalising infertility, such as by informing patients that ‘couples aren’t 100% fertile anyway’ [GY1], and encouraging women to plan conception around ‘the plans for their life’ [GY3]. One gynaecologist [GY4] asserted the importance of working with patients on ‘a plan for reproduction within a plan of management of endometriosis,’ saying that it was ‘no good’ to subject a woman to major surgery in hopes of enhancing fertility only to discover post-operatively that she had no immediate plans for children.

Mental health

All clinicians commented on the potential for endometriosis to have an adverse effect on mental health, whether specifically in relation to depression and anxiety or in general terms such as ‘psychological issues’ and ‘mental or emotional health.’ Features of endometriosis that clinicians described as affecting mental health included living with symptoms and treatment side-effects, making decisions about treatment, receiving inadequate health care, living with uncertainty and receiving poor social support. Most spoke of one or two, usually including living with chronic pain.

A few clinicians said that problems with mental health could cause endometriosis symptoms. For example, one gynaecologist speculated, ‘Do mad people get endo or does endo make you mad? It’s probably a bit of both’ [GY5]. Women whose symptoms did not respond to treatment were more than once described as ‘difficult women’ whose problems were attributable to their psyche rather than their soma. It was said of one such woman:

In her case it was obviously a reflection of … more mental health issues somewhere else and I think it stemmed from a bit of parental, matrimonial disharmony. So there’s a little bit of a psychosomatic expression of the wider problem within the family [GY6]

According to one GP, endometriosis is ‘very inter-related with their [women’s] mental health’; after expressing uncertainty about the causal direction, she concluded, ‘I guess the endo comes first’ [GP1]. A gynaecologist asserted that poorer mental health in women with endometriosis was a ‘reactive depression to their circumstances’ [GY4].

Perceptions of psychosocial care for endometriosis
Assisting women with the psychosocial impact of endometriosis

As gatekeepers, GPs saw themselves as best placed to identify those women with endometriosis who may need psychosocial support. Depending on need, they may provide care, refer to a psychologist, or recommend an endometriosis support group. Three gynaecologists made similar comments, although one expressed reservations about aspects of GP care:

I know that some GPs treat the psychological by giving light antidepressants and stuff which … we are not dealing with. But the treatment needs to be combined to look at all aspects of the disease [GY3]

A gynaecologist recommended ‘probably a psychologist’ [GY2] to provide psychosocial support, while a gynaecologist and a GP preferred to ‘spread the load’ [GY4] to ‘holistic’ [GP1] complementary and alternative health care providers who do not consider only ‘local symptoms but … psychosocial wellbeing as well’ [GP1].

Half of the gynaecologists but no GPs said that family, friends and partners may have a role in providing support to women with endometriosis. However, one gynaecologist cautioned that such support ‘can be good for the patient; other times, family and friends can actually be worse for the patient’ [GY1]. Most GPs and some gynaecologists proposed endometriosis support groups as additional sources of psychosocial support. However, one gynaecologist was concerned that support groups encourage women to be ‘consumed by the whole endometriosis kind of way of life’ [GY8].

A few gynaecologists said that, while some women would benefit from psychosocial support and care, treating the physical mechanics of endometriosis would usually obviate the need:

They want me to do something to them that is going to help their symptoms and so I do something, whether it be surgical, whether it be medical; things like that, to try and help their symptoms and therefore improve their sort of quality of life [GY7]

Clinical training for the provision of psychosocial care for endometriosis

There was a notable difference between the specialities in that most GPs identified providing psychosocial care to women with endometriosis as part of their job, whereas half of the gynaecologists did.

Half of the clinicians explicitly stated that doctors were not well trained ‘to treat the psychosocial impact of a lot of diseases, let alone endometriosis’ [GY2]. It was said that GPs are not well trained ‘from even the physical side’ [GP2] of endometriosis. A GP [GP3] who teaches early-career doctors argued for improvement in training, although one gynaecologist [GY8] thought training had improved and another [GY1] felt well trained by a university known to consider psychosocial aspects of care. One GP [GP4] said that all doctors are trained to be mindful of mental health in people living with any chronic illness but that teaching emphasised better-known conditions such as diabetes and chronic back pain. Some clinicians said that the fundamental determinant of whether women were assisted with the psychosocial impact of endometriosis was the doctor’s interest:

We’ve been trained pretty well, I think, in the psychosocial aspects of medicine, if we chose to listen to that. … Some doctors still tend to avoid those areas of medicine, but there’s an onus on us to deal with the whole person [GP1]

One gynaecologist said that the ability to assist women with the psychosocial impact of endometriosis often came from ‘years of experience’ and ‘whether they see endometriosis sporadically, frequently, or that’s the main part of their practice’ [GY6]. Another [GY3] said that only those doctors who see patients with chronic pain need to be trained in the psychosocial aspects of these conditions. Most gynaecologists thought such training was unnecessary because others were better qualified to help:

I don’t think that my role as a specialist gynaecologist is to try and cope with all the psychological ramifications of the disease. I’m probably more like the mechanic, but then, as I said, try and share the load with others who can help the patient [GY4]

Discussion

This study is the first to consider in detail medical professionals’ perspectives of women’s broader experiences of endometriosis and of the provision of psychosocial care for endometriosis. Although there have been several reports of the psychosocial consequences of endometriosis for women,[8, 9, 12] limited attention has been paid to the care required to address these consequences; the research reported here is therefore a valuable contribution to the literature on endometriosis. While the number of participants recruited is adequate for qualitative research where the goal is depth rather than breadth of knowledge,[18] the familiar recruitment difficulties in this population[20] meant that there were some gaps in the desired diversity. We acknowledge the absence of clinicians who practised outside urban areas, male GPs and recent graduates from tertiary medical education. Our participants did not include women’s and allied health professionals’ perspectives on psychosocial care for endometriosis; these are important targets for future research.

We found clinicians’ perceptions of women’s experiences to be consistent with those reported by women[8, 12] living with endometriosis can have a considerable impact on women’s work and social lives, intimate relationships and mental health. However, clinicians provided less comprehensive descriptions of the effects of endometriosis on a woman’s work life (limiting it to menstrual pain) and on social life and intimate relationships (often discussed in relation only to sexual activity). Some clinicians endorsed the historic ‘medical myth’ that endometriosis may be caused by poor mental health.[21] The weight of evidence suggests poorer mental health in women with endometriosis is the result of living with a condition for which little effective care and limited social support may be available.[8, 10, 15] Clinicians’ comments on infertility reflected women’s reports of clinical encounters[8, 12] and their desire for empathic and individualised fertility care.[4]

Clinicians expressed varied opinions about who was responsible for assisting women with the psychosocial impact of endometriosis and whether they were well trained to do so. Their views could be summarised as endorsing a multi-disciplinary approach; GPs tended to position themselves as best placed to oversee this care, while gynaecologists suggested various potential providers but rarely themselves. These findings are consistent with a call by the World Endometriosis Society[1] and others[15] for women to receive individualised care from a multidisciplinary network of healthcare professionals, and access to endometriosis support groups and organisations. However, not all women need or want such services and consensus has not been reached on how such networks may best operate.[1] Models of care shown to benefit patients with other chronic conditions, such as diabetes,[22] may serve as guides to comprehensive endometriosis care.

Most clinicians assessed themselves as not adequately trained to understand and provide care for psychosocial aspects of endometriosis; half of the gynaecologists did not believe it was necessary for them to do so. Given that endometriosis is a complex chronic disease known to have significant psychosocial implications for women who live with it,[8, 12] it may be appropriate for care to encompass more than the biological[23] and for formal consideration to be given to meeting the diverse needs of these women. While different professions may have varying degrees of expertise in providing psychosocial care, all should be able to identify when such support is needed and refer as appropriate. Increasingly, medical education in Australia and around the world is incorporating a biopsychosocial approach to practising medicine.[24-27] That some participants in this study took a more biological approach may reflect the years since they completed tertiary medical education (mean = 24.67); continuing professional development opportunities in psychosocial care may be appropriate. Further, this research supports the need for current clinical guidelines for endometriosis to address the psychosocial aspects of endometriosis and appropriate care.[7] Of note, some clinicians commented that training was currently inadequate for the psychosocial aspects of many conditions and also the physical aspects of endometriosis, suggesting a need for improved general training for psychosocial care and in all aspects of endometriosis.

Our findings suggest a need for clinicians to be further supported in the provision of psychosocial care for endometriosis, potentially through expanded clinical guidelines and professional development opportunities. Further research is needed to understand optimal care for the psychosocial aspects of endometriosis, including consideration of a diverse range of health professionals’ perceptions and examining developed models of care which effectively address psychosocial factors for other chronic diseases. At a time when there is no cure available for the biological, attending to the psychological and social may facilitate better assistance to women in the lifetime management of endometriosis.

Acknowledgements

The authors are grateful to the clinicians who gave their time to participate in this research. Kate Young and Jane Fisher acknowledge the financial support they receive for their research.

Financial Support

Kate Young receives a stipend scholarship from the National Health and Medical Research Council and Australian Rotary Health. Jane Fisher is supported by a Monash Professional Fellowship and the Jean Hailes Professional Fellowship, which is supported by a grant to the Jean Hailes Foundation from the H and L Hecht Trust managed by Perpetual Trustees Pty Ltd.

Red Bank, N.J., – HealthyWomen, the nation’s leading independent health source for women, today announced the results of a nationwide survey* with women and healthcare professionals surrounding endometriosis, a disease that occurs when tissue similar to that normally found in the uterus begins to grow outside of the uterus, leading to long-term pelvic pain (during or between periods), pain with intercourse and other painful symptoms.1 The survey, sponsored by AbbVie and titled “What Do You Know About Endometriosis?”, was conducted in the U.S. among 1,211 women over the age of 18 and 352 healthcare professionals.2 The results indicate that education is needed to help women identify all the painful symptoms of endometriosis and address them with a healthcare professional. Professionals need to be more aware of evaluating and treating endometriosis, understand its impact on their patients’ daily lives and support proper communication of symptoms with their patients.

“The survey findings indicate a lack of knowledge and conversation about endometriosis symptoms among women,” said Beth Battaglino, RN, and CEO of HealthyWomen. “Without informed communication of endometriosis symptoms, it can take longer for women to receive a diagnosis. Both patients and healthcare professionals would benefit from further education to increase awareness of symptoms so women can take action when they present.”

Key Survey Findings2

• Among almost 700 respondents, only 29% were able to correctly identify all the painful symptoms associated with the disease, including painful urination or painful bowel movements.

• Nearly half (42%) of more than 850 women respondents were unaware that pain during sex may be associated with endometriosis and 20% of HCPs surveyed rarely or never ask female patients if they have pain during sex, even though it is a common symptom of endometriosis.

• Among 862 women respondents, two-thirds (67%) know someone who has endometriosis, but the majority (60%) said they rarely, if ever, speak to friends, family or those closest to them about pelvic pain.

• Among 219 women respondents who identified themselves as diagnosed with endometriosis, 42% were told by their HCPs that their pain was simply “part of being a woman,” while 47% had their symptoms described by HCPs as “normal.”

• Among approximately 260 women respondents who identified themselves as diagnosed with endometriosis, 72% had to see two or more HCPs and 24% saw four or more before receiving a diagnosis. Nearly a quarter (23%) of respondents with endometriosis waited four or more years to receive a diagnosis.

• Only 34% of HCPs surveyed said they ask if pelvic pain interferes with daily activities at every visit. However, among approximately 260 women respondents who identified themselves as being diagnosed with endometriosis, 86% said the condition interferes with their day-to-day activities at least some of the time.

Using the survey findings, HealthyWomen created a series of data-driven, educational content on endometriosis intended to provide information and tools that women can use in conversations with their healthcare providers. The materials were released in March as part of Endometriosis Awareness Month and can be found on HealthyWomen.org.

The survey and educational content are part of a disease state awareness campaign called Get in the Know about ME in EndoMEtriosis (meinendo.com), an effort focused on galvanizing women to learn about and understand endometriosis, which affects an estimated one in 10 women.3 The campaign seeks to educate and empower women to evaluate whether they are the “ME in endoMEtriosis” by finding out how to identify and address symptoms of endometriosis and helping others on their journey to do the same.
For more information, visit MEinEndo.com and join the conversation online by sharing #MEinEndo.

*This survey titled “What Do You Know about Endometriosis?” was conducted within the United States by HealthyWomen in partnership with AbbVie. It was conducted online from December 7, 2016, to February 6, 2017, among 1,211 women ages 18 and older and 352 HCPs. The number of non-HCP respondents to any given question was no less than 219 women ages 18 and older and totaled as many as 1,123 women ages 18 and older.

About HealthyWomen
For more than 25 years, HealthyWomen has inspired and empowered millions of women to take a proactive role in their health. A progressive and unique women’s health not-for-profit, HealthyWomen combines a 24/7 online health media platform with award-winning education and advocacy campaigns. HealthyWomen’s web destination engages with readers and health care providers alike and provides valuable health information that educates women and guides them through the various ages and stages of life. For more information on HealthyWomen, visit http://www.healthywomen.org.

About Endometriosis
Endometriosis occurs when tissue similar to that normally found in the uterus begins to grow outside of the uterus, leading to long-term pelvic pain (during or between periods), pain with intercourse and other painful symptoms.1 These growths are called lesions and can occur on the ovaries, the fallopian tubes or other areas near the uterus, such as the bowel or bladder.4,5 There is no cure for endometriosis, and the associated pain is currently managed with oral contraceptives, progestins, danazol, nonsteroidal anti-inflammatory drugs, opioids and GnRH agonists, many of which are not specifically indicated for the treatment of endometriosis. In more extensive cases, surgical interventions, like laparotomy or laparoscopy, are often pursued, and they may not be curative for all individuals.6

About Get in the Know about Me in EndoMEtriosis
Get in the Know about Me in EndoMEtriosis is a women’s health campaign dedicated to empowering women to learn about and understand endometriosis. Endometriosis affects an estimated one in 10 women,3 but despite being one of the most common gynecologic disorders in America, there is a lack of awareness and prioritization of endometriosis as an important women’s health issue.7 Learn more at MEinEndo.com and join the conversation online by sharing #MEinEndo.

About AbbVie AbbVie is a global, research-based biopharmaceutical company formed in 2013 following separation from Abbott Laboratories. The company’s mission is to use its expertise, dedicated people and unique approach to innovation to develop and market advanced therapies that address some of the world’s most complex and serious diseases. Together with its wholly-owned subsidiary, Pharmacyclics, AbbVie employs more than 28,000 people worldwide and markets medicines in more than 170 countries. For further information on the company and its people, portfolio and commitments, please visit www.abbvie.com. Follow @abbvie on Twitter or view careers on our Facebook or LinkedIn page.

Laura Furiosi, 35, has endometriosis, where the lining of your uterus grows in other parts of your body. Hers has even made it to her diaphragm.

When I was a teenager, I collapsed from pain in my abdomen. I thought I had appendicitis. It was endometriosis in my uterus and ovaries – but I’m one of the lucky ones because I got diagnosed straight away.

I struggled with it a fair bit over my young teens and twenties. It feels like a deep debilitating pain. It started off around my period but as the endo grows, the pain is there all the time. It can stop me walking and even make me pass out.

I’m now 35, and have been living for around two decades with endometriosis. It’s not just tummy pains, it turns up as referred pain in my shoulder, back and hips. There’s no cure, and for me my only option is surgery to have it excised. I’m fine for a little while after, but then it grows back. I’m up to 15 surgeries now. After, the doctors are amazed I’m walking around. The one I had when I was 21, they found it in places they didn’t know it could go.

It may have been a precursor. I had a massive surgery, recently where they found it on my diaphragm. I’d gone through three years of doctor’s appointments, pleading with them that something was wrong. They checked for irritable bowel, heart problems, asthma, heart burn, lung problems. I even got told, maybe my problem was psychological and I should see a psychiatrist. That stands out as my darkest moment – when someone in the medical profession didn’t believe my pain. It really got to me.

But I knew the feelings and persisted. I pushed through and three years on found a really amazing surgeon, who found the endometriosis sitting right underneath my liver. He was the third surgeon to look, and he only found it because he tipped me on my side and the liver flopped over and it was under there. I was so ecstatic he’d found it because it hadn’t come up in scans.

I’d only heard of diaphragmatic endometriosis, when I was searching for answers to my pain on an online support group I’m part of – a woman on there had it. I’m unsure of the exact numbers but I know it’s pretty rare.

Living with pain

It affects everything. I was doing kickboxing but I had to give it up because it was too painful for my diaphragm. I’m also in a choir, which I adore, but the long notes are nearly impossible.

Twice I’ve taken hormonal drugs, so I can give my body a break for six months and get overseas to do trade shows for my company. It’s sort of like early menopause and a last resort. I’ve heard it can help others long-term, but for me it only holds off the inevitable, it doesn’t fix it.

I’m lucky I run my own business, because if I didn’t work for myself, I wouldn’t have a job. I own a toddler and baby swimwear label called Rashoodz. We’re distributed in Walmart and made a huge deal in China in July. I want to show women you might have a disability or disease, but you can find a way to get around it and achieve.

Endometriosis is not taboo but people might roll their eyes because it’s an invisible disease. People see me going overseas and walking my kids to sport, and I can tell they think, ‘she doesn’t look sick’. What they don’t know is that I’ve taken painkillers and had to sleep at lunch, just to walks my kids home from school.

We need to talk about endo

Living with endometriosis is not something I talk about much with people who don’t understand. I need to start talking about it more so we get somewhere with it because one in 10 women have it. It’s not just about periods and infertility, it’s a chronic disease that can ruin your life and you can get it anywhere – your brain, lungs, diaphragm, you name it – and there’s no cure.

This is why I’m persisting with pushing for more research and awareness. I’m also a mother of three girls – 10, 8 and 6. I have missed school presentations and birthday parties, because I’ve been in hospital. They’re used to it and my husband has really stepped it up, but the possibility that one of my girls may have to experience endometriosis one day, fill me with dread.

If I could go back and talk to myself as a young woman, I’d say, ‘find yourself an endo specialist’. I would have managed to avoid a lot more surgeries. Most importantly, stand up for yourself, you know you, and develop a thick skin. Look after your mental health and prioritise self-care. I’m lucky to be able to share regular mental health days with my friends.

I’m asking Australians to support March Into Yellow – a movement to start a conversation about endometriosis. Anybody can wear yellow for the month of March and set up an everyday hero account to raise funds. Let’s find a cure.

Simple chores, like taking out the trash or folding laundry, cause stabbing pains to rush through Silvia Young’s abdomen.

“It feels like my internal organs are wrapped in barbed wire,” Young said in a recent interview. “Every move hurts. Sometimes, I can’t even breathe.”

The 46-year-old Danville woman consulted more than 25 doctors over the last three decades to treat endometriosis, a puzzling condition in which tissue similar to endometrial lining grows outside the uterus and bonds like glue to other organs. There is no known cure or cause for the illness.

An estimated 5 million women suffer annually from endometriosis in the United States, yet medical experts and patients told NBC Bay Area it’s commonly dismissed as a non-serious ailment and frequently misdiagnosed. Some women are turned away and labeled ‘drug seekers,’ while others languish in silence.
The average patient waits almost 10 years for a proper diagnosis — a decade in which endometrial lesions are left to breed and organs have time to fuse together.

The San Francisco march is meant to empower those women to share their stories. For too long, advocates say, women have been told to hush up about ailments affecting reproductive health, a trend of mass silencing that results in inferior care.

“Raising awareness is really all we can do at this point,” said Young, who co-founded the website Unite Endo and is organizing an online-only campaign, #FemTruths, for women who can’t physically participate in the march due to pain. “There’s a lot of shame with this condition, so being vocal about what we go through and coming out of the shadows could help make change.”

Advocates are also hoping the visual display will produce more funding for research. The National Institute of Health estimates $11 million in funding for studying the condition in 2017, a pittance compared to conditions that affect a similar number of people, such as diabetes.

“Women are literally killing themselves because of this,” said Dr. Peter Gregersen, a New York-based researcher who has been studying genes that could be linked to Endometriosis. “But the funding is pathetic. There are endless stories of the travails that these women have, and most gynecologists don’t know a lot about it, or they have an attitude about it that is not commensurate with its degree of severity.”

Because the disease can only be diagnosed through exploratory surgery, called laparascopy, many doctors will wait until a patient presents with infertility to investigate, Gregerson said. By then, any lesions could have spread to other organs.

But that’s not the only roadblock stymying diagnoses. Long-established gender biases in healthcare may be partly to blame, too. Studies have shown that women are treated less seriously compared to male counterparts when presenting with pain in emergency rooms.

“Unfortunately, I think a lot of doctors don’t really believe women are having this much pain,” said Dr. Andrew Cook, a Los Gatos reproductive endocrinologist who specializes in pelvic pain disorders. “Lack of proper training, lack of believing the patient. There are a lot of factors in play.”

Some women are also taught that immensely painful periods — one of the telltale symptoms of the condition — are to be expected.

“The culture says to them, ‘well, pain isn’t abnormal,” Gregerson said. “”Maybe pain is something you should suck up.’ So, the condition isn’t treated unless it’s severe.”
Peggy Santa Maria, a 63-year-old Los Gatos woman, worked for decades to have her condition taken seriously by insurance providers and doctors. Along with her husband, she now runs the “Endo Inn” out of her home, a safe space where women can stay free of charge before and after surgery.

More than 100 women have walked through her doors in search of someone with whom they can commiserate.

“Just to be believed can be a huge relief,” Santa Maria, who is also the President of the Endometriosis Association of San Francisco, said. “To cry with someone, to hold them and become better through the tears.”

For low-income women living with the condition, additional hurdles abound after diagnosis. Visits to an endometriosis specialist are often deemed “out-of-network,” leaving many women scrambling to find care.

Denita Espito, a San Jose woman who relies on Medicaid for healthcare coverage, knows the burden all too well.

For years, her gynecologist prescribed birth control pills and doled out drugs for pain management, but nothing alleviated her crippling cramps. She was then presented with a “cure-all” hysterectomy, a surgery in which the uterus is removed and menopause is jumpstarted.

Desperate to live pain-free, she went through with the surgery, but it didn’t help. Instead, doctors stopped taking her pain seriously, she explained through tears.
“I feel bullied by the doctors,” she said. “Like it was just a way to get me out. It has ruined my life, and I just know it’s not going to be over until I die.”

She was dismissed as a “drug seeker,” a label given to many endometriosis sufferers who demand pain management, Gregerson said. She can’t afford to see experts in Thoracic Endometriosis, a rare form of the disease that could be causing the sharp pains in her chest that she equates to “getting stabbed over and over again by Freddie Krueger.” Sometimes, the pain is so bad that she passes out.

“It’s just not fair,” she said. “If you have money, if you’re privileged, this is more manageable. But if you can’t afford the treatments, you’re forgotten about and pushed to the side. It’s like your body doesn’t matter. It’s like you don’t matter.”

Espito now counsels women about the added struggles that befall low-income women with the condition. Though she wants to participate in the march, she can’t due to constant pain and is counting on allies showing up in her stead.

Dr. Tamer Seckin, a gynecologic surgeon who co-founded the Endometriosis Foundation of America, told NBC Bay Area that it’s not uncommon for women suffering from endometriosis to find themselves regretting surgery.

In his practice, he has seen teen girls given unnecessary hysterectomies by doctors who are not properly trained in other methods, such as excision therapy, which is the procedure he and Cook recommend. It involves meticulously cutting lesions away and separating organs that have fused together, but it’s an expensive procedure.

“A hysterectomy is not going to help if the endometriosis has grown outside the uterus…” Seskin said. “I have had girls at the age of 17 given hysterectomies. It’s indiscriminately prescribed as treatment. It’s hard not to shed tears when you see these women.”

After the march later this month, Young, Espito and Santa Maria hope to reach other women who may be suffering in silence. Meanwhile, Cook, Seckin and Gregerson are working within the medical community to increase awareness about the need for early intervention and proper treatment.

All agree: when women’s pain is taken more seriously, outcomes will improve. Better funding and treatment will follow, they hope.

“I just want everyone to know about it, so we can do something,” Espito said, wiping away tears. “We’re not depressed, we’re not sad, we’re not wrong. We’re human. And all we’re asking for help.”

Endometriosis occurs when the lining of the uterus grows outside the uterus. Previous studies have suggested the condition is a risk factor for ovarian cancer.
Ovarian cancer may be caused by mutations in several genes, but whether the mutations are also involved in endometriosis or they mediate the link between the two diseases is unknown.

“Identifying overlapping genetic risk factors for endometriosis and ovarian cancer might be able to provide evidence of which molecular pathways are involved not only in the [origin], but also in the pathogenetic [or gene-caused disease] pathway leading from endometriosis to ovarian cancer,” researchers wrote.

The analysis showed that a variation in the HNF1B gene (rs11651755) was associated with endometriosis, providing a link between this disease and ovarian cancer. None of the other variations tested were associated with a risk of endometriosis.

“The validated ovarian cancer risk [variation] rs11651755 in HNF1B was identified as a susceptibility [factor] for endometriosis,” researchers wrote. “This could be an indication that HNF1B plays a role in the pathogenesis (the way the disease develops) and possibly in the progression of endometriosis to ovarian cancer.”

The HNF1B gene has been previously linked to other diseases, such as liver dysfunction, endometrial cancer and prostate cancer. It encodes a transcription factor, or type of protein that controls and regulates gene expression in cells. Gene expression involves the production of other proteins.

“It can be hypothesized that HNF1B is involved in the very early pathogenesis of ovarian cancer including endometriosis as part of this pathway,” researchers added. “Further studies are needed in order to confirm these results and to try to identify drivers and inhibitors of this multistep [cancer pathway] through endometriosis. HNF1B represents a reasonably well known gene that can help promote this research in the field of endometriosis and ovarian cancer.”

Cramps usually begin after a girl starts menstruating, but commonly improve as she gets older
Rebecca Deans
Thursday 9 February 2017 11:07 GMT

The experience of having periods varies between women. They can be light and completely painless for some, but completely debilitating for others.

The majority of women experience some cramping for one to two days during their period, and this is normal. Teenage girls are also more likely to suffer from painful periods compared to adult women, particularly adult women who’ve had children. But painful periods in adolescence usually improve over time.

However, some women have period pain that isn’t easily managed and that requires them to take time off school or work. Pain to this extent is not normal, and needs to be investigated.

Why periods cause pain

A period is the shedding of the endometrium – the lining of the womb (uterus). Every month, the uterus prepares itself for pregnancy by growing a thick lining that has a rich blood supply, awaiting implanting of an embryo.

When pregnancy does not ensue, the body produces a period, the by-product of the endometrium. During this time the blood vessels open, the lining sheds off the uterine wall, and the uterine muscle contracts to expel the blood and tissue.
During these mild contractions, it’s common for women to feel a lower abdominal cramping sensation as blood products are expelled through the uterine body and out of the cervix before it makes it way out the vagina.

The contractions are triggered by hormone-like compounds produced by the body called prostaglandins, which are the main source of pelvic pain associated with menstruation. Higher levels of prostaglandins have been associated with more severe menstrual cramps.

Cramping is usually strongest in the first one to two days of the period, then settles for the remaining four to five days.

Pain during periods is called dysmenorrhoea, and there are two types: primary and secondary.

Primary dysmenorrhoea refers to pain with periods, that begins soon after girls start menstruating. This tends to get better as the teenager gets older. The cause of this pain is not known, but hormonal fluctuations are thought to be implicated.

The main medications used to treat this pain are non steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen (Nurofen) or naproxen (Naprogesic). They work by blocking the action of prostaglandins.

Secondary dysmenorrhoea generally refers to period pain resulting from a medical disorder in the reproductive system. Instead of period pain improving over time, it worsens. This can be due to several conditions, the most common of which is endometriosis.

What is endometriosis?

Endometriosis is a condition in which tissue similar to the lining the endometrium (womb), grows outside of the womb. It can grow on the ovaries, bowel, and in some rare cases has even been found outside of the pelvis such as the lungs. The hormones that trigger a period cause bleeding at these sites of implanted endometrial tissue, and this causes pain.

Endometriosis usually causes period pain to start earlier and last longer than what is commonly experienced with menstruation. Sometimes the pain doesn’t go away when the period ends. Women with endometriosis can describe pain at the the time of ovulation, or pain with sex. Another problem associated with endometriosis is infertility.

Women themselves may be unaware of endometriosis, or think their pain is normal. Many tend to tolerate the pain, which is can also occur in teenagers and young adults.

Although the exact cause of endometriosis is unknown, there are a number of theories such as retrograde (opposite to the intended direction) flow of endometrial tissue out of the womb through the fallopian tubes, and this tissue can implant in the pelvic cavity in locations outside of the womb.

The way nerves interpret pain in the pelvis also plays a role. It is an unusual disease in that some women can have a lot of endometriosis and have very few symptoms, whereas others can have only a small amount of disease and suffer from quite severe symptoms.

Affected girls and women often face negative impacts on their education or careers. There may be reduced productiveness at work or study as a result of the pain and discomfort caused by endometriosis.

Treatment includes hormonal tablets such as the oral contraceptive pill. The progestogen implant or intrauterine device, are also helpful for some in reduction of pain with periods. But these treatments don’t work for everyone.

How will I know if I have endometriosis?

Diagnosis of endometriosis can only be made via keyhole surgery. If it is seen surgically, and removed, women often have an improvement in their symptoms. But symptoms can return. Although it is not a deadly disease, the disruption it causes to women and society can be distressing – and as it is chronic, persisting throughout the woman’s menstrual life.

One study found an average delay of nearly four years before women with endometriosis sought medical help for their symptoms, and this delay brings about much anxiety and distress over the uncertainty of their own condition and how it can be resolved.

Many women are told their period pain is normal, but at keyhole surgery a number of these women with pelvic pain actually have endometriosis. However, making a decision to pursue surgery is a difficult one, as this carries minor risks such as bladder, bowel and vessel injury as well as anaesthetic risks. Care for women needs to be individualised in terms of whether the risks of surgery outweigh the symptoms experienced.

There are a number of different conditions which contribute to period pain. These include pain from the intestines, bladder and kidney, muscles and bones (including hip and back pain). There are also conditions that cause pain from the nerves in the pelvis and back.

Unresponsive doctors and others who don’t understand add to the anguish endured by women with endometriosis.

Times photographer Eve Edelheit felt trapped in her apartment for months in 2016 after her endometriosis surgery took a bad turn and put her on bed rest for almost 10 weeks.

March 2, 2017
Story and photos by EVE EDELHEIT
Times Staff Photographer

I couldn’t believe it was back.

I was in Jacksonville, about to photograph my first out-of-town college football game as the solo shooter, and there I was, crying on the floor of the media bathroom, clutching my abdomen. It felt as though a shadowed figure was stabbing me again and again. I gripped the toilet bowl to try to stand, but was frozen in pain.

I’d had surgery three years earlier to make that feeling stop. But endometriosis has a habit of coming back for more. It develops when the lining that’s supposed to be inside a woman’s uterus grows, instead, on the outside. That tissue thickens. It gets trapped in places it doesn’t belong, irritating organs, forming scar tissue and cysts. Mine had left little noncancerous tumors all over my uterus, bladder and ureter, making every menstrual cycle feel like I was passing a kidney stone.

I still don’t know how I made it onto the football field that Saturday in 2014, how I managed to waddle from end zone to end zone for four hours and turn in 42 photos. I did it to show I could, just like any of the men holding cameras. But it wasn’t just determination driving me; it was shame. I didn’t want to let on that there was a problem, because I was embarrassed by it.

You can’t talk about endometriosis without talking about your period. Hormones from that time of the month command the misplaced tissue to break down as if it were a normal uterine lining, except instead of breaking down, these cysts just stay where they are and inflict pain. The worst days found me in bed, unable to move.

I imagined finally having that conversation with my male boss and colleagues, talking about how menstrual cramps feel like birthing contractions, how peeing hurts so much, it makes me cry. I pictured a subtle look of disgust flash across their faces. Or the thought that I was a complainer, that I couldn’t handle what every other woman could, that maybe I couldn’t handle other things, like challenging assignments.

So I told them I was out with a cold.

I chose to live in pain for more than a year rather than schedule a surgery. I withdrew from my friends and fell into depression. My work suffered; it was hard to stay present, to be ambitious, when I was so distracted. I was lashing out at my fiance, who bore the burden of being my caretaker. Questions kept me awake: What would it mean to miss so much work? Could I continue on a career path I loved so dearly but was so physically demanding? Would I ever be able to get pregnant? Even if I had surgery, would the pain just come back again?

Endometriosis cast a cloud over my wedding and honeymoon, and that’s when I decided I couldn’t go on like this. I got the surgery last summer, and finally had that conversation with my boss that I had put off for so long. The only look on his face was concern. “You’ve been so stoic,” he said. “I wish you would have told me. I had no idea.”

So many people have no idea about this disorder that afflicts millions of women around the world. That’s why I set out to do this photo essay. I joined online support groups and found others with stories just like mine, who have suffered with perhaps the worst symptom of this disorder, loneliness.

I photographed nine women of different races and ages; endometriosis doesn’t discriminate. I traveled from Tallahassee to Miami trying to make them feel like their voices were heard, like they no longer needed to be ignored or afraid, but empowered to speak up.

In talking to them, I felt less alone.

•••

Erin Modglin poses for a portrait in her hospital room at Medical Center of Trinity on Jan. 30. She shows her scar, left, from her most recent surgery.

Erin Shell Modglin, 36, New Port Richey, unemployed
Her symptoms started at age 10, but she wasn’t diagnosed until she was 22. She has had 14 surgeries.

The person you were before endo is no longer there. They’re gone. You have to find your new self, your new normal and your new happy. … If you dwell on your life before endo, it will put you into a deep depression, because you can’t go back, you can’t be that person.

•••

Aleka Sapp poses for a portrait in her home in Tallahassee. Sapp has three children and is unable to work due to the pain from her endometriosis. She is currently waiting to see if she qualifies for disability pay.

Aleka Sapp, 39, Tallahassee, unemployed
She had symptoms when she got her first period, but she wasn’t diagnosed with endometriosis until she had a total hysterectomy.

I don’t want to have sex. It changed my whole view about sex. Everyone is like, “Sex feels so good, it’s great.” And I’m like, “But doesn’t it hurt?” When I was young, it was more pleasurable to have sex. But now I don’t want to go out on dates because I don’t want that responsibility of having to fulfill that sexual part of the relationship. Because you don’t want to feel that pain”

Katie Gowan, 34, Brooksville, unemployed
She was diagnosed with endometriosis three years ago and has had a total hysterectomy.

Sometimes family is the hardest to deal with. They will say things like, “You looked fine yesterday.” Or, “This, too, shall pass.” I fear death every day.

•••

Stephanie Lebow holds all of the medication and vitamins she has been told to take by doctors.She has been pushed back and forth among different doctors all over central Florida, being told different answers for her pelvic pain.

Stephanie Lebow, 23, Celebration, works at Disney World
She was diagnosed one year ago by her sixth doctor, and she has had three surgeries.

She found the endo. It was there. I wanted to cry. I was so happy. It’s an incredible feeling to have a doctor believe you and do something about it.”

•••

Rachael Pressley was told repeatedly that she had gallbladder issues, but it turned out she had spots of endometriosis on her liver.

Rachael Pressley, 33, Tampa, social worker
Rachael Pressley was diagnosed with endometriosis in 2015 and has had two endo surgeries.

Each appointment, each month I would come back and say, “Hey I have this pain. Hey what you gave me isn’t working and I’m still in pain every day. I’m still crying when my period comes and my gremlin is scratching to get out.”

•••

Meg Connolly was unable to work for months before and after the surgery for her Stage 4 endometriosis.

Meg Connolly, 25, Miami, entrepreneur
She was diagnosed with Stage 4, or severe, endometriosis at 23.

I still have that scar in my mind of what I went through and I’m always afraid it’s going to come back. … One word to describe endometriosis and what it’s done to me? Hell.

•••

Bianca Semprit used to run track before her endometriosis left her bedridden for nearly a year.

Bianca Semprit, 25, Hialeah, computer programmer
She was diagnosed with endometriosis in 2012 and has had one surgery.

If I could just run again. If I could just take off and I decide when I stop. There’s something that you take for granted. When you have one thing after the next against you, especially something that doesn’t go away, you just want to be able to say, “I’m okay right now.’” I want to be able to get to that point. I’m not there yet, but I’m really trying.

•••

Beginning at the age of 12, Darcy Frick saw 16 doctors before receiving the correct diagnosis.

Darcy Frick, 24, Holiday, works at Jimmy John’s
She was diagnosed with endometriosis 1 1/2 years ago. She has had one surgery.

I think it’s a really lonely disease. You spend a lot of time turning down plans. I felt like a terrible friend. I felt I was the one not being attentive enough to my other friends. I couldn’t. I would go to work all day and it would just suck the energy out of me. You have no energy when you are in that much pain.

•••

Mandy Miller eventually became pregnant through in vitro fertilization. Women are often told that endometriosis won’t return after pregnancy, but Miller’s did.

Mandy Miller, 34, Winter Haven, stay-at-home mother
She was diagnosed in 2009 and has had two surgeries.

I was going to school to become a teacher and work with children. Then all of a sudden I’m thinking I can’t be around other people’s children if I can’t have my own and that’s an everyday reminder of something we have no control over.

•••

About this story

For this project, I wanted to take a different approach than I normally do on my daily newspaper assignments. I wanted to slow down and challenge myself, so I opted to photograph the portraits on medium-format film on a friend’s Hasselblad film camera. Taking time to focus the camera and being more selective about why I was making each portrait allowed me to spend more time talking and connecting with the women. The photographs were taken where each of them experienced the most pain.

I relied heavily on social media throughout this project and shared it on multiple platforms under the hashtag #endosistersfl while working on it over the past six months. As I plan to continue this project, please reach out to me if you would like to be a part of the series or know someone who would.

The painful disease of endometriosis that affects one in ten women could be diagnosed by a simple blood test, rather invasive surgery, thanks to research being developed out of the US.

Heather Bowerman from the San Francisco start-up Dot Laboratories has designed a blood test that can identify the presence of endometriosis where the tissue grows on the outside of a woman’s uterus, rather than the inside which causes debilitating pain.

This blood test diagnosis would take one day. Currently, the time between onset of symptoms to diagnosis of endometriosis is up to 11 years.

Endometriosis causes extreme pelvic pain and in some cases, infertility. While there is currently no cure for the condition, having a quick diagnosis would mean women could better manage their pain and have more awareness of the chance of infertility if they eventually want to start a family.

“Dot Laboratories is commercialising the very first technology to diagnose endometriosis,” Ms Bowerman told Hack.

“It takes up to 11 years to diagnose and Dot Labs can take that 11-year time frame and make that into one day with a simple blood test.”

The initial trials have been so successful Ms Bowerman is now in conversations with two global pharmaceutical companies who are looking to partner with her.

“Our dream about what the world would look like in 5 or 10 years or for our daughter’s generation is that Dot Labs can be used as a screening tool for the disease,” she said.

Syl Freedman, who is the co-founder of EndoActive and an endometriosis advocate, says this type of test would be invaluable to young women who are beginning to experience extreme period pain from an early age.

“If I had been diagnosed a lot sooner there’s a good chance I wouldn’t have developed chronic pain,” she said.

“We have normalised women’s pain in that if we are in pain then we think or that’s just normal and I’m not going to go and talk to someone about it because pain is normal.

“We shouldn’t be treated any differently than men and I think if guys were bleeding from their balls and doubling over in pain for months of the year then they would be taken seriously and I think we should as well.”

Louise Hull, Associate Professor for Adelaide University and also on the Endometrisos Australia Advisory Board, says endo sufferers should hold their excitement until tests have been further studied.

“We’re all still trying to work out which people are going benefit from the testing but at this point in time, the idea would be that we would be able to tell without having the surgery certainly more accurately,” she told Hack.

“I think it’s a very interesting study and it is one that several groups have been working on, mainly because there is a massive gap in diagnosis and women have to undertake surgery which is quite invasive and has some risks.”

Endometriosis facts:
• There is no cure
• Hysterectomy is not a cure
• Pregnancy is not a cure
• It does not always cause infertility
• Diagnosis can only be made via surgical intervention
• Endometriosis pain does not only occur during periods
Source: Endometriosis Australia

Findings of a Danish retrospective cohort study show that women with endometriosis are at significantly increased risk for experiencing a variety of adverse pregnancy outcomes.1

According to the authors of the recently published study, the research represents the largest and most detailed study of obstetrical and neonatal complications in women with endometriosis. They stated that its results confirm the findings of previously reported large studies. Considering the magnitude of the complications, the authors recommended increased antenatal surveillance for women with endometriosis.

Risks of obstetrical and neonatal complications among women with endometriosis were analyzed using data from the Danish Health Register and the Danish Medical Birth Register. The study population was comprised of women ages 15 to 49 years old who delivered in Denmark from 1997 through 2013. It included 11,739 women with a diagnosis of endometriosis who gave birth to 19,331 infants. The “unexposed” control cohort included 615,533 women who gave birth to 1,071,920 infants.

Analyses of neonatal complications showed significantly increased risks of preterm birth before 28 weeks (3.1-fold) and before 34 weeks (2.7-fold), being small for gestational age (1.5-fold), a low Apgar score (1.4-fold), a diagnosis of a malformation within the first year (1.3-fold), and neonatal death (1.8-fold) for infants born to women with endometriosis.

The investigators also performed a subgroup analysis to assess risks in primiparous women with a singleton pregnancy and found the risk estimates for most outcomes were largely unchanged. Findings of another subgroup analysis showed complications risks were higher among women who underwent surgery for endometriosis prior to pregnancy. The investigators considered a surgical history a marker for severe endometriosis.

The risks of most complications among women with endometriosis were reduced after adjustment for having had assisted reproductive techniques (ART), although they were still significantly increased. The investigators noted adjustment for ART also adjusted for severe endometriosis as well as for twin pregnancies.

Discussing their study limitations, the investigators said that the control cohort may have included some women with undiagnosed endometriosis who were not captured in the national registers. However, such misclassification would likely lead to underestimation of the risk of complications in women with endometriosis.

They also acknowledged that information on histological confirmation of endometriosis was not available.

Although they considered a history of surgery for endometriosis as a surrogate for having more severe disease, they raised the possibility that surgery may also affect pregnancy outcomes by its effects on the intrauterine environment. Therefore, they called for further research investigating the effect of abdominal surgery.